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Giant Cell Arteritis Diagnosis
Polymyalgia Rheumatica (PMR) | Last Active: Mar 31 7:58pm | Replies (104)Comment receiving replies
Hello everyone. I was diagnosed with Giant Cell Arteritis in April of this year, after having symptoms of jaw pain, scalp tenderness, pain at my left temple and a severe headache... and then waking up to only seeing blotchy gray areas out of my left eye. This was due to the evolving central retinal artery occlusion happening, which can be seen in GCA. I was admitted to the hospital and immediately put on a massive steroid infusion every 24 hours. That actually cleared up some of the blotches after the first infusion, but I still have areas of gray blotches in the center of my left eye vision. After four days in the hospital, I was sent home and started prednisone at 60mg. Soon after, I started seeing a rheumatologist who put me on a slow tapering schedule with the prednisone. I am now down to 8mg and will be finishing the course in October. In addition, I get Actemra infusions every 4 weeks. I am wondering if anyone else has had this kind of vision impairment happen with GCA. As mentioned, I can still see out of my left eye (which I am immensely grateful for), it's just that I see gray blotchy areas straight ahead. Also, I am wondering if during your tapering down on prednisone, has anyone experienced a drastic change in mood and energy level as you go to the lower mg tapering. I did read that this is common, but after feeling so "hyped up" on the higher doses, when I hit 12.5mg's, I definitely felt feelings of being kind of "down", moody, and cranky/irritable. I've tried to counteract those feelings with exercising more, which has helped some. Thank you in advance and I am so happy to have found this support group.
Replies to "Hello everyone. I was diagnosed with Giant Cell Arteritis in April of this year, after having..."
I have found my tolerance and expectation levels are extremely low until about noon. I try to do my own thing during this time and not have any interactions with people. Seems to be worse the first couple of days after I taper down.
Wow! Very similar to my situation. Same symptoms in mid April except no vision loss as I guess I caught it early. Biopsy May 21 confirmed GCA,
Started at 40 mg of Prednisone that increased blood pressure into the 140/85 range. Now down to 10 mg and BP has moved closer to normal. Plan is to go to 7.5 mg in three weeks and start Acterma infusions in mid August.
I am exercising 90 minutes a day ( weights, spin bike, elliptical, treadmill) with no pain of any kind.
The Acterna side effect list has me a bit nervous. No thrilled with the RA practice here as always seems reactive versus proactive. Going to Mayo Clinic in Jacksonville next week for consultation and opinion.
My other bloodwork is normal. Northing out of normal range. Seems like I may have panicked initially when I told RA doc here that I wanted off of Prednisone as soon as possible. Seems like there are folks who have been on it for years and years that as still walking around and living a decent life.
I stated on a few other posts it seems impossible to predict anything since every person reacts differently to the meds and side effects.
Hope you eye issue clears up.
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Hello, @jcb, and welcome. I'm sorry you lost part of your vision to GCA. I came very close, but my vision turned out ok. I went to the emergency room a little over a year ago when I started having strange vision problems. The vision in one eye would blur for a few seconds. It was like looking at an Impressionist painting. I had all of the other symptoms of GCA that you list except for the headaches. I also took the infusions for 3 days, and started prednisone at 60 mg per day. I also take Actemra injections weekly.
Your taper has been a lot faster than mine. It took me about 36 weeks to get down to 8 mg per day. I'm at 1 mg now, and I hope to be finished with prednisone in mid-August. I've had occasional down times as I've tapered, but they never lasted more than a day. Usually it was just for a few hours. I haven't had any other symptoms of PMR and GCA or prednisone withdrawal since I started treatment over a year ago.
It might have helped me that my rheumatologist had me stay at one dose for a full month occasionally. For example, I stayed at 10 mg for a month. then tapered to 5 1 mg at a time for 2 weeks each. Once I got to 5 I have tapered 1 mg every month. My rheumatologist wanted to give my adrenal glands a chance to become active again by tapering slowly below 5 mg.